A growing number of people who use Facilitated Communication Training (FCT) are becoming independent of physical support. In response, this research investigated changes in family members' perceptions of their son or daughter following the introduction of FCT, and how physical support was reduced over time. Semi-structured interviews were conducted with people who use FCT, their family members and their facilitators. It was found that once people commenced using FCT, they revealed unexpected abilities, thoughts and feelings which changed the way their family members perceived them. A number of strategies appeared to assist people who use FCT to reduce physical support. FCT was found to have had a profound impact on the lives of people and to assist in developing communication access without physical support.
Background
Facilitated communication training (FCT) is an access strategy whereby a facilitator physically supports, but does not direct, someone so that they can communicate functionally using a communication aid (Crossley, 1994). FCT is used to support people with complex communication needs, who may have speech and movement difficulties, associated with a variety of diagnoses including Autism Spectrum Disorder, cerebral palsy or other developmental disabilities (Cardinal & Biklen, 1997; Crossley, 1994). FCT provides training to increase functional hand use and overcome the aforementioned movement difficulties and enable more effective use of a communication aid (Crossley, 1994). The movement difficulties experienced by some people may result from dyspraxia, that is, difficulties in organizing movements into intentional and purposeful actions (Biklen, 1990; Dziuk et al., 2007). Whilst people with movement difficulties are thought to benefit most from FCT, it has also been proposed to assist people with difficulties in eye-hand coordination, range of motion, muscle tone and strength, index finger isolation, tremor, and proprioception (Crossley, 1994).
Perceptions of People who use FCT
Many people with complex communication needs who have movement difficulties are typically initially diagnosed with an intellectual disability, implying below-average cognitive functioning (Donnellan & Leary, 1995). However, this perception of cognitive disability is based on an assumption that people with unconventional movements have a restricted capacity to understand their physical and social environments (Donnellan & Leary, 1995). In addition, perceptions and expectations are often influenced by unconventional expressive language, delayed responses, and being seen as dependent (Biklen & Kliewer, 2006). Lack of a shared communication method that enables representation of thoughts to others will make it difficult, if not impossible, to accurately demonstrate one's intelligence (Borthwick & Crossley, 1999).
When people with diagnoses traditionally associated with cognitive difficulties started to produce comprehensible expressive language using FCT, previously-held assumptions about their cognitive abilities were challenged (Biklen, 1993; Mirenda, 2008). It was proposed that initial assessments regarding their cognitive capacities were inaccurate due to movement difficulties impacting on their ability to communicate (Biklen, 1990) or inaccurate interpretation of intelligence tests, which are often standardized on people who had speech and no movement difficulties (Biklen & Burke, 2006; McDonald, 2000). Rather than assuming incompetence, it has been suggested that assessment methods should be redesigned to demonstrate sensitivity to these diversities and confounding variables, as well as interpreted meaningfully to reflect a person's performance (Polgar, 2009). In addition, diagnoses and intelligence should not be viewed as concrete concepts, but rather social constructions, which reflect the understanding and expectations of society at any point in time (Biklen, 2005; Donnellan & Leary, 1995). Consequently, cognitive diagnoses frequently assigned to people with significant movement difficulties and complex communication needs may not reflect their true cognitive capacities and these labels can establish inaccurate or inappropriate expectations (Leary & Hill, 1996).
Acceptance of FCT as an access strategy appears to be aligned with broader disability paradigms. Some proponents of FCT promote "the presumption of competence" (Biklen, 2005, p.1) which assumes that nonverbal people with a disability can demonstrate their "agency" (Rossetti, Ashby, Arndt, Chadwick & Kasahara, 2008, p.364) without implicating limitations derived from assumptions of intellectual ability. To presume competence of people with movement difficulties is to make the "least dangerous assumption" of a person's intellectual ability by showing respect towards the individual (Rossetti & Tashie, 2002, p.1). This is integral to empowering an individual through maximizing opportunities to demonstrate competence (Rubin, Biklen, Kasa-Hendrickson, Kluth, Cardinal, & Broderick, 2001). Biklen (2005) and Mirenda (2008) suggested the use of qualitative inquiry to develop a better understanding of the communicator's perspective and the implications for practice.
Authorship
In the 1990's a majority of FCT research focused on the exploration of the validity of the strategy. Many of the controlled studies used an experimental design involving message passing with blinding procedures, yielding mixed results (Shane & Kearns, 1994, Szempruch & Jacobson, 1993, Wheeler et al, 1993, Sheehan & Matuozzi, 1996, Cardinal, Hanson & Wakeham, 1996, Calculator and Singer, 1992, Marcus & Shevin, 1997). Concerns were raised about authorship using FCT, with several studies finding evidence of facilitators influencing the movements of people who use FCT, potentially unconsciously (Eberlin, McConnachie, Ibel, & Volpe, 1993; Kezuka, 1997; Shane & Kearns, 1994; Smith, Haas & Belcher, 1994). The unique requirements of each person who uses FCT, and the skill required of the facilitator to understand and respond to these, call into question whether blinding the facilitator in these studies is an appropriate way to test the strategy (Weiss & Wagner, 1997). Although people using FCT often do not perform to assessors' standards for message-passing tasks in test situations, rehearsal of testing processes has been shown to benefit people who use FCT, enabling them to successfully message pass in a test situation (Crossley, 1994; Cardinal, Hanson, & Wakeham, 1996; Marcus & Shevin, 1997).
Evidence for the viability of FCT as access strategy has been supported by studies demonstrating authorship through consistency of word usage and grammar across different facilitators (Niemi & Kärnä-Lin, 2002) and documentation of several people who use FCT becoming able to access communication aids without physical support (Biklen, 2005; Broderick & Kasa-Hendrickson, 2001; Cardinal & Biklen, 1997; Rubin et al., 2001). Researchers have further demonstrated the applicability of FCT for individuals through other designs including naturalistic approaches to validation (Department of Family Services and Aboriginal and Islander Affairs, 1993, Simon, Toll & Whitehair, 1994), and single case studies (Broderick & Kasa-Hendrickson, 2001, Weiss, Wagner, & Bauman, 1996). It has been suggested that validation for the individual and the viability of FCT, can be ultimately demonstrated when people who use FCT are able to access their communication aids without physical support (Crossley, 1994; Mirenda, 2008; Yoder, 1995).
Reducing Physical Support
Reducing physical support to a person who uses FCT is also called fading (Crossley, 1994). This is a graded, systematic and individualized process with the intention of achieving independence from physical support, an ultimate goal (Crossley, 1994; Donnellan, LaVigna, Negri-Shoultz, & Fassbender, 1988). Crossley (1994) proposed a facilitation provision continuum, which aims to provide decreasing levels of physical support in a distal-to-proximal progression along the dominant upper limb of the person using FCT. Some of these stages include: hand molding (grasping the hand to develop index finger pointing), perch (where the person's metacarpophalangeal joints rest on the facilitator's index finger), wrist support, forearm support, elbow support, upper arm pressure, shoulder touch, physical contact with another part of the person's body, and eventually no physical contact (Crossley, 1994).
Strategies proposed to reduce physical support include using accommodations (e.g., use of rhythm, adjusting the environment), multi-sensory stimuli, being facilitated by multiple facilitators, and providing the least amount of support required (Biklen, 1993; Crossley, 1994; Donnellan & Leary, 1995; Mukhopadhyay, 2007). However, the type and combination of strategies used differ amongst individuals (Donnellan & Leary, 1995; Leary & Hill, 1996). Whilst several fading strategies have been suggested, there is limited information about which mechanisms are most effective for reducing physical support. Research into strategies which reduce physical support has been recommended (Broderick & Kasa-Hendrickson, 2001). Research into the use of FCT with people of different diagnoses, ages, and stages of fading physical support would assist in understanding how people are best supported and how this support can be reduced over time. Mirenda (2008) recommended retrospectively investigating the common factors among people using FCT who had achieved independence of physical support.
Aims and Scope of this Study
The research on FCT has largely focused on establishing this access strategy's validity, but there have been suggestions to move beyond validation studies (Mirenda, 2008). The experiences and perceptions of the FCT user, their family members and facilitators have not been systematically explored. In this study two aspects of these experiences were focused on. Firstly, over time, the reduction of physical support has resulted in independent communication in people who were previously assumed to be incapable of functional communication and high level thought. Thus, it is of interest as to whether or not others' perceptions of the abilities of people who use FCT have changed. Secondly, determining which fading strategies work, and for whom, may assist people using FCT to move towards independent communication. Exploring these two aspects will contribute to understanding the barriers to acceptance of FCT as a communication strategy and how to reduce reliance on others for physical support.
Therefore, this study aimed to explore the following questions:
- What are participants' (people who use FCT and their families/facilitators) experiences of changing perceptions of the person who uses FCT
- What strategies have been effective in reducing physical support in FCT?
Method
Participant Recruitment
Information about the study was disseminated through gatekeeper organizations in Queensland and Victoria. Two participant groups were recruited: people who use FCT and their family members/support persons. Opportunistic sampling was used to recruit participants. The people who had been contacted by the gatekeeper organizations and subsequently expressed interest with the researchers became participants in the study. The researchers collected background information including demographic details and information about participants' FCT use with the aim of recruiting a diverse group of people using FCT in terms of number of years using FCT, and levels of facilitation support.
Participants
People who use FCT were included in the study if they: had been identified as a FCT user by an accredited FCT Instructor; were aged 12 or over; could be observed using FCT during the interview; could understand spoken English; and were able to communicate in English through the use of an alphabet-based communication aid. Where possible, someone other than a family member facilitated the FCT user during the interview however this was not possible for three interviews.
To protect confidentiality of participants, individualized participant details are not provided; however, the following summary describes the participants as a group. The participants included seven people who use FCT, eight family members (6 mothers and 2 fathers), and three facilitators. Six of the participants who use FCT had a diagnosis of Autism Spectrum Disorder, and one of Down Syndrome, with characteristics of Autism. The age of the participants using FCT ranged from 16 to 44 years of age and they had been using FCT between 2 to 22 years. Only one participant who uses FCT was female. Males diagnosed with autism consistently outnumber females (Fombonne, 2003). Thus, the gender ratio of participants using FCT in the study reflects international epidemiological studies. A variety of communication aids were used by participants during interviews, such as laptop, Dynawrite, and low tech alphabet board. Participant A verbally repeated the word after his facilitator read out the letters and the word whilst using the communication aid. The remaining participants were family members (for all but one participant who uses FCT, this comprised of at least one parent per participant) and facilitators who were not related to the person using FCT. These participants all provided written consent prior to being interviewed.
Data Collection
A phenomenological approach was adopted to gain a deeper understanding of the lived experience of people who use FCT and their family members (Patton, 2002). Face-to-face, semi-structured interviews were undertaken separately with all participants at mutually agreed locations, mainly in participants' homes. All participants were asked open-ended questions, with the questions for people who use FCT constructed to their reported comprehension level. The interview questions investigated expectations before FCT; initial and ongoing experiences of using FCT; changes in the family members' perceptions of the abilities of the person using FCT, as a result of using this access strategy; and the strategies that people using FCT, their family members, and facilitators have found to be effective in reducing the support required for communication. The interviews were audiotaped. Photographs were taken of participants who use FCT and the range of physical support levels used during the interview. A full interview schedule is available from authors on request.
Ethical Considerations
The study received ethical clearance from The University of Queensland and Queensland Department of Communities (Disability Services). Participant information sheets with varying readability levels were provided to people who use FCT and their family members. These information sheets detailed the purpose of the study and participants' involvement. People using FCT, and their family members and facilitators were requested to sign assent and consent forms respectively, guaranteeing confidentiality and the right to withdraw from the study at any time.
Data Analysis
Audio recordings of interviews were transcribed and combined with fieldnotes for thematic data analysis. Where people using FCT used a communication aid with the capacity to provide a printout, the printouts of communication during the interview were used to augment the transcript based on the digital audio recording. Initial coding was undertaken by the research team, using paper copies of the transcripts. The transcribed data and identified themes were then managed using N-Vivo software. One interview transcript was independently analyzed by all four researchers who then met to discuss the themes and collaboratively developed a preliminary coding framework. Each subsequent transcript was independently analyzed by two researchers and the identified themes were discussed before being coded. Any variations in coding were discussed until consensus was reached. For consistency, one researcher was involved in the coding of all the interviews. The coding framework was refined after all paper copies of the interviews had been initially analyzed, prior to the transcripts being coded in N-Vivo. A summary of themes was collated from each participant's transcript. This summary and the interview transcript were sent to each participant for confirmation of accuracy. The results were discussed collaboratively by the research team in order to confirm key themes.
Rigor
Trustworthiness in qualitative research is measured by criteria for credibility, transferability, dependability, and confirmability (Patton, 2002). These indicators of qualitative research rigor are addressed through the following discussion of data collection and data analysis strategies. During the data collection phase, participants using FCT were asked to use the least amount of physical support possible in order to convincingly demonstrate that their responses were their own. Triangulation during data collection occurred, with people who use FCT, their family members and facilitators being interviewed within the same appointment. In addition, multiple coding, colleague checks and participant checks were carried out during the data analysis phase. Participants were sent a copy of their interview transcript and the results and discussion of the study. Two participants requested minor changes to their quotes to increase the clarity of their statements.
Stance of the Researchers
One member of the research team (a speech and language pathologist) is an experienced facilitator and presents FCT workshops. This team member did not undertake any of the interviews. Three members of the research team are occupational therapists (including a final year honors student and a university lecturer). One occupational therapist works as a clinician and spends time with people who use FCT approximately once per month. The remaining two occupational therapists have limited experience of FCT. All members of the research team are aware that through FCT some people have become independent communicators (requiring minimal or no physical support). Therefore team members accept FCT as an appropriate strategy for enabling some people to demonstrate communication ability.
Results
In relation to changing perceptions of the person who uses FCT, three themes were identified by all participant groups. These were: low expectations prior to the use of FCT; mixed reactions to FCT; contributors to initial success; changes in perception of the FCT user; and varying approaches to reducing support.
Low Expectations Prior to Using FCT
Prior to FCT, many parents did not have very high expectations of their son or daughter. Some of these expectations were influenced by diagnosis. Family members of all FCT users in the study spoke about these low expectations:
Before we found out that he was autistic, I was thinking he had a lot of potential, because he was so healthy … I suppose the diagnosis put another expectation on it … I think since he was diagnosed we tended to treat him younger than what he should be. (Participant F's family member)
And with the diagnosis came a number of negative expectations:
The expectation for [the person using FCT] would be that … when we got too old to … do everything with him … he would just go in an institution or whatever because there was really no hope for him. (Participant B's family member)
Mixed Reactions to FCT
Family members recalled their uncertainty about FCT when their son or daughter first started using this access strategy. They generally experienced an initial reluctance to accept the strategy, describing feelings of apprehension (Participant F's family member) and disbelief (Participant E's family member), and thinking that FCT was "a con" (Participant C's family member/facilitator). Participant D's family member said, "initially we were skeptical" but expressed that they also felt hopeful. Parents of six FCT participants who use FCT experienced eventual acceptance following either confirmation of authorship, complementary behavior, or feeling movement whilst facilitating the person. For example, family members said authorship was confirmed through "a definite style" (Participant D's family member) observing "sentence structure" as "idiosyncratic" (Participant E's family member), telling a facilitator "things that were right that she couldn't possibly know" (Participant E's family member), or consistency across facilitators (Participant E's family member). Participant E's family member noticed complementary behavior, in which "you can also look at his body language … all of the [facilitated] expressions were totally in keeping with what he was feeling". Participant C's family member/facilitator described feeling movement whilst facilitating the person:
I assumed that there was influence and so on … it was only the second time that I actually, that we went from the appointment and I actually felt [my daughter's] hand moving that I realized that she was making the movements that she couldn't make normally.
In contrast, Participant G expressed that his parents "still dont quite believe i can do it". Participant D suggested that the reason people don't accept FCT is because they are confronted with a different perspective of a person with a diagnosis that implies assumptions about intellectual functioning. He said, "they are fearsm[sic] … that i am intelligent as them … that they dont like that i look different to them". Nevertheless, with the acceptance of FCT came a range of reactions. For many it was confrontational:
We had a conversation years ago, when he first started doing FC[T] that he thought he got treated like an autistic idiot. And all the family treated him that way. And after I said to him, "that's the way you appeared to us at the time, you know" because he couldn't communicate his needs … he obviously had a lot bottled up there …. he let fly one night, and told us all the stuff. It was pretty upsetting at the time but it was great. (Participant B's family member)
Some experienced guilt.
We actually had quite guilt — guilty feelings that we had perhaps settled for something a lot less than what he was capable of, even though it was quite okay at the time…not that [the person using FCT] ever sort of blamed us or anything … but, you know, as a parent you sort of think, "I should have seen that". (Participant A's family member/facilitator)
Others had to reconsider their future.
When we realized it wasn't a con, I realized I had an almighty problem. I wasn't terribly rapt with the idea. If you're living with a 14-year-old who, you suddenly realized is pretty bright, it rather made a mess of my life … in my future plans. And there were moral considerations. [The person using FCT] understood what was happening to her. Obviously, I had to re-draft those plans. (Participant C's family member/facilitator)
Changes in Perception of the FCT User
Three subthemes emerged from participants' (who use FCT) comments about changes that have occurred since using FCT. These related to their actions ("doing"), their understanding ("knowing"), and how they felt ("feeling").
Doing
Being able to communicate enabled the person to have a "voice" (Participants B and F) and express themselves. Participant A said, "I can now give my opinion on things and be part of the process of my life" and Participant B added, "I know how to express my needs and I now have my voice". In addition, family members and facilitators recognized that the power of having a voice enabled people using FCT to express their thoughts and give their opinions. One family member noted that when compared to the Picture Exchange Communication System they had been using, FCT enabled greater expression of her son's personality.
[What FCT has enabled my son to express, that Picture Exchange Communication System did not, is] more of a personality that he has, and it's just a two-way conversation rather than just me telling him or showing him what I plan for him to be doing next … he's got his own mind, as far as, he doesn't want to do what we want him always to do. (Participant F's family member)
Using FCT also enabled users to reveal a number of abilities ranging from the traditionally-valued school-based skills (e.g. reading, writing, and arithmetic), various creative skills (e.g. painting and manual arts), and teaching and advocating (e.g. engaging in group discussions and debates, presenting at conferences). Once they were able to demonstrate their abilities to a greater extent, participants who use FCT were able to experience more opportunities: "introduction to high school and university were only possible with facilitation" (Participant C). Consequently, people using FCT became "active participants" (Participant B) in school, work, leisure activities and the community, being able to educate others. Participants who use FCT indicated that engaging in these activities was meaningful and made them feel valued. Participant A explained, "I think people now see me as an intelligent person who can contribute to society". Similarly, family members identified that their son or daughter's unexpected abilities presented the opportunity for participation in more age-appropriate activities.
Knowing
This subtheme is interrelated with the notion of having a voice. Family members reported that once their son or daughter had commenced using FCT, they began to provide insights into their lived experience. These insights enabled family members to develop a greater understanding of their son or daughter. For example, "just his feelings … it all made sense … but at least we understood him a lot better and it made sense about what he was saying and how he acted" (Participant B's family member), and "as he got older, we got an insight into the way he was experiencing the world and experiencing his body and that has continued to amaze us" (Participant E's family member).
As a result of the new insights provided by the participants who use FCT, others began to view them differently. Participants who use FCT reported that others now saw them as "clever really clever" (Participant E), "intelligent" (Participant A) and "bright" (Participant C) in contrast to previously being viewed as "a dummy in the corner" (Participant A) or "mindless not having a brain" (Participant B). In an email report, Participant D's family member revealed, "[FCT has changed the way I see my son] completely. It has also changed the way we treat [the person who uses FCT]. We now consult him when there are decisions to be made, instead of making the decision for him." Participant G's facilitator also said, "I think what it's given, what it's given us is a different perception of what these kids are capable of".
Feeling
Some participants who use FCT expressed a newfound sense of freedom. Participant B revealed, "my body is no longer my prison" whilst Participant E described the experience as "like coming out of darkness into light, i could say my thoughts for the first time". People who use FCT also felt that there were changes in their interpersonal relationships: "that people value me more" and treated [me] like I matter" (Participant G). Family members confirmed these observations by indicating that they now show more respect towards their son or daughter and treat them as more mature.
Contributors to the initial success of FCT
Participants identified a number of factors contributing to the successful use of FCT, some of which are further explored in relation to the theme of reducing physical support. Six participants used FCT to communicate on a daily basis. The seventh participant was the exception with his FCT use occurring only in the school environment. One family member and one facilitator identified the lack of availability of facilitators as a barrier to communicating using FCT. In one instance, this had previously resulted in undesired cessation of FCT use, until the person using FCT reached an age when he became eligible for a service that provided access to a regular facilitator.
The interaction with the facilitator was also found to be important. Two experienced facilitators were observed to demonstrate skill and flexibility in their facilitation style. They conveyed an understanding of FCT, and a responsiveness and "synergy" (Participant B's facilitator) to the movements and communication of the person, adjusting verbal accommodations and physical support regularly. Participant C's family member/facilitator revealed, "we're pretty good at each other's body language … I read her body language".
Varying Approaches to Reducing Physical Support
There appeared to be five considerations in the process of reducing physical support for people using FCT. These considerations were: the strategies used; contributions of the facilitator; the need for varying levels of physical support during facilitation; a disadvantage of fading support; and the person's readiness to reduce physical support.
Strategies Used
Strategies used to fade physical support were drawn from the interview data. The group of participants who use FCT identified a range of movement difficulties. For those who had worked towards independent communication, their reasons for doing so included privacy, disproving critics and demonstrating competence. Prior to fading, Participant B's facilitator reported explaining the benefits of reducing physical support to the person he facilitates by saying:
This same facilitator mentioned that although there was initial resistance, progress in fading support occurred with "the combination of him being ready and me being persistent and encouraging as well". Other considerations mentioned included the confidence of the person using FCT (facilitators of Participants B and F), practicing (Participant F's facilitator), collaboration, and structured support (Participant B's facilitator).I guess you're used to doing [FCT] this way with [another facilitator]. What I think would be credible for you in the long term is that if we work towards independence and you look at what you're doing … I think it will look better for you.
In this study, people who used the least amount of support tended to have had at least one long-term facilitator in the past who had assisted them with reducing physical support. In addition people who used the least amount of support tended to currently have more facilitators. Participants who use FCT have between one to 15 facilitators. Those who had made few or no attempts to reduce physical support tended to have only one current facilitator, whilst those who had faded to the upper arm or shoulder had up to 15 current facilitators. The exception to this pattern was a participant who demonstrated typing without physical support (see Figure 4) who currently has one facilitator. However this person had support from multiple facilitators across numerous years while fading physical contact. This difference may have been due to individual life circumstances.
All participants, who have used FCT for more than five years, had achieved success in reducing physical support. Participant B's family member said:
The facilitator referred to in this statement had been facilitating with the person since he commenced using FCT. Some family members expressed the value of multiple facilitators for their sons or daughters, stating, "it's terribly important to us that we're not the basic mainstay of his keying because we're not. So he does need those supports to go beyond the family" (Participant E's family member). "That's what seems to be the big hurdle at the moment; having people around [the person who uses FCT] that can actually facilitate him" (Participant F's family member).Most of the people who facilitate with [the person who uses FCT] don't spend that much time with him, except maybe for a few people. And [a specific facilitator] gets more out of him because he demands more expertise … [The specific facilitator has] been good because he's made [the person using FCT] complete sentences and do full stops.
Facilitator contributions
The participants identified the importance of the facilitators' contributions. These extended beyond the physical support provided. When asked how FCT had helped, Participant C found it "difficult to describe have to say it seems to integrate feeling thought and sight". Participant C's family member/facilitator reported that their daughter had previously written, "touch made me bring my hand into focus, feeling the point of contact gave me an accurate measurement". This was similarly expressed by Participant B: "[FCT] get[s] my body to be more in sync with my true intentions, get[s]me to focus and provide the right prompting to help me to remain on task".
One facilitator (Participant C's family member/facilitator) explained, "just because I don't touch her anymore doesn't mean I'm not facilitating". In the same interview this family member/facilitator indicated that, particularly with respect to reducing physical support, she would provide a lot more monitoring. Many facilitators indicated that they provided verbal accommodations to support the person using FCT to optimize their typing. Facilitators of Participants B, C and F, who had reduced physical support, used a variety of phrases including "pull back", "push", "push a bit harder", "take it right back", 'holding it back", "keep going", "looking, eyes", "good correcting", "do it again", "is that what you wanted?", and "just one more" (facilitators of Participants B, F, and G).
Varying support
The physical support provided to participants by facilitators was found to vary (see Figures 1-4).
Figure 1. Participant being facilitated with perch level of support.
Figure 2. Participant being facilitated with forearm support.
Figure 3. Participant being facilitated with upper arm support.
Figure 4. Participant using FCT with no physical support.
Participants B (see Figure 3) and C (see Figure 4) utilized a reduced amount of physical support to demonstrate that they were the people communicating. Two family members observed that the amount of physical support required depended on the context:
It [the amount of physical contact] depends on what she was doing. If she was writing a letter or having fun, yes [we might have a lot of physical interaction]. But if it's … an ethical requirement [such as examinations, demonstrating her abilities, doing academic work or getting an answer to a question where it is important that influence is seen to be absent (e.g. voting in elections, talking to a doctor, etc), there is a lot less touch. … so it would depend what she's doing. By and large [using language] isn't meant to be an obstacle race. (Participant C's family member/facilitator- text in brackets provided by participant to increase clarity)
Participants reported a tendency to require more physical support when they were "tired" (Participants A, B, and D), "upset" or "emotional" (Participants B and E), or "anxious" (Participants B and E). Participant B's family member said, "if it's a day when he's restless and anxious he will want more physical support and he's not really able to type as well because his body gets really stiff". Participant D's family member described, "when he gets tired, [the facilitator] will come back down onto the hand". Participant E's family member remarked, "if it's a highly emotive thing, [my son] will actually change the positioning [to provide more support]" and Participant G's facilitator explained that the person who they facilitate requires greater physical support when the message is more important. In contrast, Participants A and D believed that FCT was easier when they considered particular messages as being important, although it was not confirmed whether being easier necessarily referred to requiring less physical support. Family members of two participants with Autism Spectrum Disorder who use FCT (Participants C and F) also reported that noise was a major distraction and made it more difficult to communicate using FCT. This sensory sensitivity issue, was managed in both cases by controlling the environment with stable lighting (so that it did not make a buzzing noise) and wearing headphones. In addition, Participants B and D found that communication using FCT was easier in the morning.
A Disadvantage
A disadvantage in reducing physical support which was identified by several people who use FCT, was reduced typing speed. This was especially problematic for those who wanted to communicate quickly. Participant B explained, "I think fast typing is easier but makes me lazier … I don't want to be slow like [another person who uses FCT who has reduced physical support]". In addition, Participant D (see Figure 2) questioned the value of reducing physical support for him: "why would I have to go slow when I have so much to say".
Readiness
Another factor in reducing physical support is the readiness of the person who uses FCT and their family to do so. Participant A's family member explained, "that isn't part of our aim at the moment" and Participant E's family member added, "fading support is not important to us; it's the message that is important to us". Others who were initially reluctant to fade were now "content" (Participant D's family member) or "very keen to try" (Participant B). However, the concept of reducing support was considered to be "political" by two independent interviewees (Participant C, and Participant E's family member). For example, Participant C, who was able to type with no physical support, explained the need for touch: "some kind of strange idea good caring people have that independence in all forms are desirable but really that is a political and ideological idea because their need for touch in people with autism and possibly cerebral palsy".
Discussion
Following initial diagnosis, perceptions of people were formed by others, however these subsequently changed once the person began using FCT. A diagnostic label resulted in people developing a perception of the person which then led to a reduced set of expectations of the individual's potential. Despite initial uncertainty and skepticism, once people commenced using FCT and were able to use expressive communication purposefully, family members' perceptions of them changed to be generally more positive. This reflects how FCT challenges the nature of societal assumptions of cognitive abilities in people with particular diagnoses, such as intellectual disability (Biklen, 1993; Jacobson et al., 1995; Mirenda, 2008).
Greater success in fading physical support appeared to be linked to increased availability of facilitators. Past investigations of facilitators have focused on determining whether or not they are influencing the people who use FCT as opposed to their role in supporting people to overcome movement difficulties. This research suggests that the role of the facilitator is broader than the provision of physical support. Well-trained and experienced facilitators appear to have developed the necessary skills to support the physical, environmental and interactive aspects of communication. In particular, a skilled facilitator can support communication by providing a positive and emotionally supportive environment, and being responsive to the person's variable movement and communication support needs. A number of different verbal accommodations were used by facilitators in this study. These served a variety of purposes ranging from supporting movement planning to maintaining attention. These findings confirm the value of using verbal accommodations suggested in the literature (Donnellan & Leary, 1995) and raise further questions regarding the role of the facilitator in supporting executive functioning e.g. planning, judgment (Grayson, 1997).
Access to effective expressive communication also gave people who use FCT opportunities to demonstrate their abilities (doing), thoughts (knowing) and emotions (feeling) and to direct changes in their lives. These new perceptions of people who use FCT challenged families and facilitators' previously-held views of intellectual disability and provided further evidence as to why we should be presuming competence with people in this group. This study further emphasizes the importance of enabling people to demonstrate competence and share understanding about their lived experience, as identified in the literature (Biklen, 1993; Biklen & Kliewer, 2006).
The value of multiple facilitators, highlighted in this study, is twofold: it appears that having more facilitators not only enables people who use FCT to be able to communicate more frequently, but it was noted that participants who had success in reducing physical support usually had more facilitators. People using FCT who reduced physical support usually had at least one long-term facilitator who they were able to spend more time with in order to develop and work towards mutually agreed upon goals relating to fading. Future research could be conducted to explore in greater depth the impact that frequency of access to facilitation support has on overcoming motor planning difficulties associated with sequenced pointing for communication purposes. Limited facilitator availability was identified as a barrier to communication which may not only limit opportunities for meaningful engagement but would also adversely affect the efforts of people trying to reduce physical support. Other strategies found to reduce physical support included having a reason to do so, monitoring the person and the environment, and providing verbal accommodations. In addition, the facilitator's knowledge of how to provide physical support at the different levels, flexibility in when to reduce physical support, confidence in facilitation, perseverance and encouragement also contributed to the success of fading support. This study highlighted the impact that a facilitator could have on fading physical support when they were able to discuss and promote the benefits of doing so.
For those who were attempting to reduce physical support, the level of physical support provided continued to vary from day to day. Fatigue or high emotional states seemed to exacerbate movement or communication difficulties and require increased physical support. Difficulties experienced by participants due to sensory distractions highlights the neurological factors that Donnellan and Leary (1995) identified as impacting on movement for communication. Consequently, fluctuations in the amount of physical support were required to overcome these difficulties and this is likely to have an ongoing influence on the process of fading physical support. Therefore it may be useful for people using FCT, their family members and their facilitators to discuss these issues when developing short- and long-term goals early in the process of commencing FCT.
Reducing physical support is an important goal to consider for any FCT user. However, even if best practice guidelines (The Inclusion Institute, 2010 ) emphasize the need to include reduction of physical support as an essential goal of any FCT program, this is ultimately decided by the person using FCT and their support network. Rossetti et al. (2008) further support the notion that the person's interest and motivation to reduce physical support seems to be essential to this process. Some participants involved in this study questioned the societal expectations to aim for communication without physical support. Whilst some participants expressed the importance of reducing support in demonstrating both the credibility of FCT and their intellectual competence, others remained content with finally having a means of communication. This research identified that some people are reluctant to reduce physical support as it reduces their typing speed. For those participants it appeared that the short-term benefits of speed and accuracy associated with an increased level of physical support appear to outweigh the long-term advantage of credibility associated with reduced physical support. It is therefore suggested that further research be undertaken to explore ways to best support people using FCT to maximize efficiency of message output when physical support is reduced.
The findings of this study are limited by the small number of participants using FCT who have made ongoing attempts to reduce physical supports. Although efforts were made to recruit participants covering a range of FCT experience, the views may not reflect all FCT users. It is acknowledged that being facilitated by a family member may have possibly impacted on the openness of some responses. This study collected some data about verbal accommodations provided by facilitators. However, as transcriptions were from an audio recording, there was insufficient data to explore whether there was a significant relationship between verbal accommodations and reduced physical support. Consequently, further investigation into this area using video recording is recommended to examine this relationship. This would also enable further evaluation of the role of the facilitator with respect to the variety of accommodations provided and the role they play in reduction of physical support. Research into this area would assist in identifying best practice in relation to providing and reducing physical support. Videorecording interviews could also provide valuable opportunities in exploring positioning for best practice in facilitation.
Researchers recommended further investigation into variables affecting performance in controlled studies; for example: the impact of message passing practice on performance, variability in individual performance across different environments, and the impact of language and behavioral difficulties on variable communication performance (Sheehan & Matuozzi, 1996, Cardinal, Hanson & Wakeham, 1996). Rather than focusing research on why people have difficulty with performance in a specific experimental design, it would be useful to identify what contributes to a person's ability to achieve broader functional goals relating to FCT e.g. greater speed in access, reduced physical support. In the last decade, video documentaries about individuals such as Sue Rubin, Jamie Burke and Larry Bissonnette, have highlighted individuals' achievements and demonstrated the viability of FCT for some individuals (Wurzburg, 2004, Kasa-Hendrickson, Broderick, Biklen, & Gambell, 2002; Biklen & Rossetti, 2005).
The next decade needs to move beyond the persisting debate around the viability of FCT, and seek to gain further clarity as to who may be a viable candidate for FCT and how we best provide support during FCT. In order to expand current understanding of how to provide effective communication support, there is a need to actively explore the cognitive dissonance created by people presumed to have an intellectual impairment communicating using sophisticated language (Mirenda, 2008).
Conclusion
When using FCT, people were able to demonstrate competence, convey what they knew, and express how they felt. As a result, families had a more positive perception of them. The acceptance of FCT as a strategy seems to be linked to current assumptions about people with unconventional movements, their assumed level of intelligence, credibility associated with amount of physical support provided and people's capacity to critique these assumptions. A number of considerations and strategies may assist in reducing physical support, including, motivation and readiness by both parties involved in facilitation, use of verbal accommodations, multiple facilitators and continuity with facilitators. However, reducing physical support can be hindered by the person's desire for speed to access communication overshadowing the need to demonstrate credibility through reduced physical support. In addition, levels of support provided may need to be adjusted depending on the person's fatigue, emotional state, ability to regulate sensory input across environments, communication context, and the importance of the message being communicated. The insights gained through exploring the experiences of people using FCT suggest that this is a useful approach to increasing understanding of this communication strategy.
| Participant | Years using FCT (n) | Current facilitators (n) | Current level of physical support | Reducing physical support | Communication aid |
|---|---|---|---|---|---|
| A | 3.5 | 1 | Perch | Not currently interested; no previous attempts | Alphabet board*; Alphasmart Neo; computer |
| B | 5 | 7 | Flat hand |
Currently interested; currently attempting; successful previous attempts | Alphabet board; Alphasmart; laptop with speech generating software*; Lightwriter |
| C | 22 | 1 | Facilitator holds over hand Elbow Arm across shoulder Facilitator's hand on leg No physical support |
Currently interested; currently attempting; successful previous attempts | Computer* |
| D | 14 | 3 | Perch Two-handed forearm support |
Currently interested; currently attempting | Alphabet board*; Computer; Dynawrite*; Neo |
| E | 13 | 15 | Varies between full hand support to shirt touch at shoulder | Not currently interested; past attempts made | Intellikeys (QWERTY)* |
| F | 2 | 6 | Perch |
Not currently interested; past attempts made | Alphabet board* |
| G | 2-3 | 3 | Hand | Not currently interested; past attempts made | Alphabet board* |
* Indicates the type of communication aid that was used during the interviews of people who use FCT
References
- Biklen, D. (1990). Communication unbound: Autism and praxis. Harvard Educational Review, 60(3), 291-314.
- Biklen, D. (1993). Communication unbound: How facilitated communication is challenging traditional views of autism and ability/disability. New York: Teacher's College Press.
- Biklen, D. (2005). Introduction: A discussion of methods. In D. Biklen (Ed). Autism and the myth of the person alone. New York: New York University Press.
- Biklen, D., & Burke, J. (2006). Presuming competence. Equity & Excellence, 39(2), 166-175.
- Biklen, D., & Kliewer, C. (2006). Constructing competence: Autism, voice and the 'disordered' body. International Journal of Inclusive Education, 10(2-3), 169-188.
- Biklen, D., & Rossetti, Z. (Producers and Directors) (2005). My classic life as an artist: A portrait of Larry Bissonnette. [Video documentary]. (Available from The Institute on Communicaion and Inclusion, Syracuse University, 370 Huntington Hall, Syracuse, NY 13244)
- Borthwick, C., & Crossley, R. (1999). Language and retardation. Psycholoquy, 10, 38, 1. Viewed on July 23, 2010, http://www.cogsci.ecs.soton.ac.uk/cgi/psyc/newpsy?10.038
- Broderick, A.A., & Kasa-Hendrickson, C. (2001). "Say just one word at first": The emergence of reliable speech in a student labeled with autism. The Journal of the Association for People with Severe Handicaps, 26(1), 13-24.
- Calculator, S., & Singer, K. (1992). Preliminary validation of facilitated communication. Topics in Language Disorders, 12, ix.
- Cardinal, D.N., & Biklen, D. (1997). Suggested procedures for confirming authorship through research: An initial investigation. In D. Biklen & D.N. Cardinal (Eds.), Contested words, contested science: Unraveling the facilitated communication controversy (pp. 173-186). New York: Teacher's College Press.
- Cardinal, D. N., Hanson, D., & Wakeham, J. (1996). Investigation of authorship in facilitated communication. Mental Retardation, 34, 231-242.
- Crossley, R. (1994). Facilitated communication training. New York: Teacher's College Press.
- Department of Family Services and Aboriginal and Islander Affairs (1993). The Queensland Report on Facilitated Communication. Brisbane, Queensland: Author.
- Donnellan, A.M., LaVigna, G.W., Negri-Shoultz, N., & Fassbender, L.L. (1988). Progress without punishment: Effective approaches for learners with behavior problems. New York; London: Teacher's College Press.
- Donnellan, A.M., & Leary, M.R. (1995). Movement differences and diversity in autism/mental retardation: Appreciating and accommodating people with communication and behavior challenges. Pacific Beach, California: DRI Press.
- Dziuk, M., Gidley, J., Larson, J., Apostu, A., Mahone, E., Denckla, M. et al. (2007). Dyspraxia in autism: Association with motor, social, and communicative deficits. Developmental Medicine and Child Neurology, 49, 734-739.
- Eberlin, M., McConnachie, G., Ibel, S., & Volpe, L. (1993). Facilitated communication: A failure to replicate the phenomenon. Journal of Autism and Developmental Disorders, 23(3), 507-530.
- Fombonne, E. (2003) Epidemiological Surveys of Autism and Other Pervasive Developmental Disorders: An Update, Journal of Autism and Developmental Disorders, (33) 4, 365-382.
- Grayson, A. (1997). Can the physical support given in Facilitated Communication interactions help to overcome problems associated with executive function? In Autism Research Unit (Eds), Living and Learning with Autism: Perspectives from the Individual, the family and the professional (pp. 231-242). Autism Research Unit: National Autistic Society.
- Jacobson, J.W., Mulick, J.A., & Schwartz, A.A. (1995). A history of facilitated communication: Science, pseudoscience, and antiscience: Science working group on facilitated communication. American Psychologist, 50(9), 750-765.
- Kasa-Hendrickson, C., Broderick, A.A., Biklen, D. (Producers), & Gambell, J. (Director). (2002). Inside the Edge: A Journey to Using Speech through Typing. [Video documentary]. (Available from The Institute on Communicaion and Inclusion, Syracuse University, 370 Huntington Hall, Syracuse, NY 13244)
- Kezuka, E. (1997). The role of touch in facilitated communication. Journal of Autism and Developmental Disorders, 27(5). 571-593.
- Leary, M.R., & Hill, D.A. (1996). Moving on: Autism and movement difference. Mental Retardation, 34(1), 39-53.
- McDonald, A. (2000). Assessing the assessors: A review of the Triple C Communication Assessment. Facilitated Communication Digest, 8(2), 9-11.
- Marcus, E. & Shevin, M. (1997). Sorting it out under fire. In D. Biklen & D.N. Cardinal (Eds.), Contested words, contested science: Unraveling the facilitated communication controversy (pp. 135-156). New York: Teacher's College Press.
- Mirenda, P. (2008). A back door approach to autism and AAC. Augmentative and Alternative Communication, 24(3), 220-234.
- Mukhopadhyay, S. (2007). Learning RPM-RPM overview. Retrieved October 20, 2009, from http://halo-soma.org
- Niemi, J., & Kärnä-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation, 40(5), 347-357.
- Patton, M.Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, California: Sage Publications.
- Polgar, J.M. (2009). Critiquing assessments. In E.B. Crepeau, E.S. Cohn, & B.A.B. Schell (Eds.), Willard & Spackman's occupational therapy (11th ed., pp. 519-536). Philadelphia: Wolters Kluwer Health/Lippincott Williams & Wilkins.
- Rossetti, Z., Ashby, C., Arndt, K., Chadwick, M., & Kasahara, M. (2008). "I like others to not try to fix me": Agency, independence and autism. Intellectual and Developmental Disabilities, 46(5), 364-375.
- Rossetti, Z., & Tashie, C., (2002). Outlining the prejudice: Making the least dangerous assumption. The Communicator: Newsletter of the Autism National Committee. Retrieved October 20, 2009, from http://inclusive-solutions.com/leastdangerousassumption.asp
- Rubin, S., Biklen, D., Kasa-Hendrickson, C., Kluth, P., Cardinal, D.N., & Broderick, A. (2001). Independence, participation, and the meaning of intellectual ability. Disability & Society, 16(3), 415-429.
- Shane, H.C., & Kearns, K. (1994). An examination of the role of the facilitator in "facilitated communication". American Journal of Speech-Language Pathology, 3(3). 48-54.
- Sheehan, C., & Matuozzi, R. (1996). Investigation of the validity of facilitated communication through the disclosure of unknown information. Mental Retardation, 34, 94-107.
- Simon, E.W., Toll, D.M., & Whitehair, P.M. (1994). A naturalistic approach to the validation of facilitated communication. Journal of Autism and Developmental Disorders, 24(5), 647-657.
- Smith, M.D., Haas, P.J., & Belcher, R.G. (1994). Facilitated communication: The effects of facilitator knowledge and level of assistance on output. Journal of Autism and Developmental Disorders, 24(3), 357-367.
- Szempruch,J., & Jacobson, J. (1993). Evaluating facilitated communications of people with developmental disabilities. Research in Developmental Disabilities, 14, 253-264.
- The Inclusion Institute. (2010). Guidelines for the use of facilitated communication. Retrieved July 30, 2010 from http://www.inclusioninstitutes.org/index.cfm?catID=30&articleID=212
- Weiss, M.J.S., & Wagner, S.H. (1997). Emerging validation of facilitated communication: New findings about old assumptions. In D. Biklen & D.N. Cardinal (Eds.), Contested words, contested science: Unraveling the facilitated communication controversy (pp. 135-156). New York: Teacher's College Press.
- Weiss, M., Wagner, S., & Bauman, M. (1996). A validated case study of facilitated communication, Mental Retardation, 34, 220-230.
- Wheeler, D., Jacobson, J., Paglieri, R., & Schwartz, A. (1993). An experimental assessment of facilitated communication. Mental Retardation, 31, 49-60.
- Wurzburg (Producer and Director) (2004). Autism is a World. [Video documentary]. United States: CNN Productions and State of the Art, Inc.
- Yoder, P. (1995). Validity of facilitated communication intervention: A response to Duchan. Journal of Speech and Hearing Research, 38(1), 202-204.
